A Woman's Journey With Rare Disease

The Death of Compassion

I was down for a check-in yesterday with my Diabetes Nurse Practitioner. It was good news.

My steroid induced diabetes that I’ve had post transplant has resolved to a point where I no longer need insulin or need to test my blood sugar on a daily basis. I still technically have pre-diabetes because of my steroid levels post transplant so I have to be careful, but it’s one less drug & one less set of data I have to track.

While I’m happy, I was surprised. I have a lot of family with diabetes, so I was worried. But now am relieved.

I visited a few of my post transplant buddies in the hospital yesterday afterward which I was happy to do. But over the past few weeks & conservation with them & others I saw a theme reoccurring: the slow death of compassion. This is evident & especially true on social media.

This is none more evident than the vote taken yesterday, but it goes beyond that. That was just the latest example.

I consistently see value judgements & lack of compassion being levied against many marginalized communities, especially the poor, sick, & disabled.

Not just by politicians but by so many people (most of whom call themselves “Christians”).

I’ve hesitated talking about this story because of the headlines & hype surrounding it, but I can’t help it. It was a stab to the heart.

Riley Hancey was 20 years old when he died recently after receiving a lung transplant in my center.

He was a human being.

Yet, his story was used to grab headlines, push agendas, & pass value judgements on social media & in the media as a whole.

What was reported on Riley’s situation was simplistic & sometimes inaccurate.

He was 19, smoked marijuana BEFORE he took ill, but needed a transplant. Due to testing positive on a drug test, he was denied a transplant in the hospital he first sought care near his community.

By the time my center took a chance on him, he was significantly weakened & on ECMO, which they reserve to keep people alive until transplant.

They transplanted him as quickly as they were able & did their best but he unfortunately died.

His family had to uproot themselves & move to Philly & stay in in one of the transplant houses while this was all transpiring.

Then they had to break the news to everyone that Riley had passed.

As I saw more and more headlines appear on a daily basis I saw what was lost. This was a young man who was overtaken by a serious & life threatening illness in the young years of his life & very quickly. But because of the headlines his story grabbed, he was lost.

What this quickly deteriorated into was value judgements on both medical marijuana and marijuana itself. But then those value judgements turned into callous disregard for Riley himself & his family.

What made me the most aghast was seeing posts by others in social media and other places in transplant organizations themselves or in “support” groups basically saying that Riley deserved to die. That he brought this on himself, he was unworthy of transplantation, any number of horrid things.

I had a hard time wrapping my head around this.

Why would anyone in a similar situation having to face transplantation themselves wish ill or death on anyone in a similar circumstance? It’s a hard thing to face.

We often feel misunderstood at times with what transplant entails & how hard a fight it is for us, our friends & family.

I didn’t know Riley, but I know no one asks to be placed on a transplant list. No one really wants to. We do it because we have to & it’s that or face death. We do it because our prospects are limited.

I don’t judge my donor & the life they lead prior to donating. To me they are a hero as is their family for gifting me their life saving organs in my time of need. Their compassion for me saved my life.

I would hope no one would judge me & my “worthiness” not knowing my situation. I feel compassion all the way around. I just wish that compassion could be extended to others.

There was a life behind this headline.

Riley meant something to a great many people.

I never met him but he meant something to me because of our shared path. I’m just genuinely sorry for his family. I’m sorry that his life, meaning, & self was lost behind agendas. Lost behind headlines, cold, & callous remarks no one would dare say to someone’s face. He deserved compassion.

As far as some of my fellow center transplantees were concerned, we welcomed Riley & his family into our fold immediately. We rooted for him to recover in the hopes of returning to a healthier life.

We shed tears when we found out he had died because even though we didn’t know him or had the pleasure of meeting him, he was a person to us.

His life had value & meaning.

Have we really become that cold as a society that we no longer care about our fellow man? Sometimes, I fear we do. Especially when I see things like this happening in this sphere.

I get organs are a scarce resource & there’s not enough to go around. But that’s not an excuse for devaluing someone’s life because they might have made a few choices prior to becoming sick that someone else doesn’t agree with.

When Riley consented to transplant, he knew what he was committing to. He earned that chance just as much as anyone else.

I’m glad it was offered to him, even if it came later than he deserved.

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4 thoughts on “The Death of Compassion”

We run into these value judgments all of the time. What I’ve got going on on my end is that I’m (almost) 43, overweight, and I’ve had 10 surgeries in less than 4 years. I happen to know a young woman who is 21 who has had 123 surgeries over her lifetime. The difference between her and I in doctors’ willingness to help her vs. me is that I’m considered “old” and therefore not worth saving, and she’s younger and when she’s well, she participates in sports. What the doctors conveniently forget is that when I’m well, I work out too – I just haven’t been well enough in the past 7 years. So she gets all kinds of tests and implanted monitors, and I am told that nothing more can be done for me (oh, and by the way, I should really try to lose weight. But if I do anything strenuous, I could have an aneurysm or a stroke and die).

And good grief, it’s not as if Riley was smoking up all the way until his transplant. He didn’t know his lungs were going to quit on him. No one did. It’s not exactly an option in the Magic 8 Ball.

Good news on not becoming a permanent diabetic! Steroids are the worst. I always want red meat or chocolate when I’m on them, and if I had a steak drizzled in Hershey’s syrup, that would probably work too. After I mowed that down I’d probably demolish my walls in a rage. But maybe that’s just me?

What you say is true too – I’ve seen it. But I will say on this same line I’ve had a lot of value judgements handed to me too esp now being post transplant some one had the gall to say when I disagreed with them that perhaps roid rage was a factor in my feelings when I was expressing them. Yet I know this something they’d never say to my face – people get extraordinarily brave behind degrees, charts and keyboards for sure. Even the other day when I was expressing my thoughts on a conference who had HHS sec. Price as a keynote as well as my thoughts on the hc bill – I was automatically labeled a complainer and consumed by fear — I wasn’t seen as someone with valid concerns. Overall I’m just tired of it. Riley was just one example of how cruel someone can be to their fellow man over a differing choice.

I’m not disagreeing with you. You as a female, without even having anyone know you are a person with medical conditions, are immediately discounted for being “hysterical” and “overeactive” because you have a uterus, without any credence given to your actual emotions whatsoever. Obviously I’ve been on the receiving end of the same dismissive behavior from health care providers and labeled as a complainer and paranoid, although I’ve been right about every single thing that has happened. It’s not about you as a transplant patient vs. me as a who knows what in the hell I am – we have very similar experiences.

truth. I get that & agree. Just saying that it also seems what comes from outside – whether it be healthcare or social media in general –is also fully based in resentment for those who are sick & disabled or become so. To them, it’s like looking in a mirror & seeing the worst most fearful scenario looking back at them. Only it’s a smoke & mirrors/funhouse image because the person staring back at them is just that, another person.